Who's on Kadcyla/TDM1?
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how often do you ladies get CT scan?
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I get PET scans every 4 months.
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Thank you for reply Denny123 ! i have had one PET scan sept 2016 prob wont get another unless we see some changes in CT scans that I get every 3.5 months my ct scans (with contrast) cover abdomen/pelvis, thorax .
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My 3 chest lymph nodes are active, so they have to watch them. Would love to just get CT scans.....
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is it normal to feel more uncomfortable a few days after treatment than right after? I am new to this and I’m sure everybody reacts differently. I am finding that 3 Days our I am more aware of my liver and feel more full. It only lasts s few days. It does dull the appetite. Just curious if anyone else has felt similar to me.
I also either have caught every darn cold going around my kids school or the treatments have left me a bit fluish.
Either way, I’m picturing the treatment working.
Oh- anyone else here had heart issues with Herceptin but doing ok with TDM1. I have to go get another e hi before my 3rd treatment to make sure my LVEF is still ok. I had to stop Herceptin twice due to low LVEF in my past.
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leftfootforward.... Hi. I always have infusion on Tues and by friday afternoon... bam.... the fatigue hits for about 2 days. I dont get nauseous only tired. I sometimes take a nap on friday just to catch up.
I havent had any heart issues at all. with herceptin or kadcyla. I do get an echo every 3 months. which... I dont care for those, i swear those techs are gonna push that wand right thru m darn ribs. OYE!!
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Hi leftfootforward, I’ve also found that fatigue and sometimes aches can hit me a few days after infusions too. I also receive Zometa once every 4 months and I definitely feel crappy for a few days after that one. I think you are experiencing a fairly normal response to Kadcyla.
I also wanted to mention that I too experienced heart function decline while on Herceptin alone. In response, my MO referred me to a cardiologist who put me on a blood pressure med. mind you, I had never had high blood pressure or any other heart problems prior to starting treatment for stage IV BC. In any case, about the time my MO was thinking to give me a Herceptin break, my PET showed spinal progression so I was put on Taxol followed by TDM-1. The good news is that I’ve been on TDM-1 for about a year now and my heart function has been fine. I still take the blood pressure med to ease any potential strain to my heart but otherwise it’s fine. In fact, per my latest echo, it has improved.0 -
Hi Kadcyla Peeps,
Just wanted to wish everyone a very Happy Thanksgiving! This year has been filled with many ups and downs and it has given me a true appreciation and feeling of gratitude for everything wonderful I have in my life today (Kadcyla being one of these blessings). Thank you all for helping me to keep grounded and positive.
Happy Thanksgiving!
Fran
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Thank you Fran, Happy Thanksgiving to you and to all the rest of the Kadcyla girls.
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Ladies, did anyone speak with their Onc on the DS-8201 super kadcyla? Just curious what your Onc said.
Hugs~
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Hi Ladies, I'm pretty new to this but would like to add that i'm on TDM1 and Pertuzumab. I have two tumors in the right breast biggest one being 6cm+ (that's what i was told but on mri shows up at 8.5cm). I get the infusion every three week's and i just had my second one on Friday. Doctor thinks it has halved in size, it does feel a lot smaller and part of it is missing. Hoping it carries on blasting these bc cells away. I just cant believe how effective this treatment is. So i've got two treatments down and four more to go before surgery.
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Welcome Carin!
Interesting that Kadcyla is being given with Perjeta! Sounds great that the tumor is shrinking so rapidly!
Good luck with your treatment and I hope you do well on it.
I hope that everyone had a nice Thanksgiving. It was tough for me this year after losing my daughter in July, but I made it through.
DL3-I will see my onc on Dec 16 and have already sent the write-up on the Super Kadcyla to him. I will be asking about it!
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Oh Denny so sorry about your loss. Thanksgiving was a little hard for our family too. My father moved in with us after getting lung cancer but it has spread to his brain! it's in-operable and rads didnt do a thing, things are going down hill very fast for him at moment!!
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Thanks Carin. Prayers for your father!
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so it turns out having a port placed on Tuesday, treatment in Wednesday , thanksgiving on Thursday, driving across the state on Friday, by myself with 4 kids, event Saturday , driving back Sunday, was too much for me. I was laid out today. I managed to get a little holiday shopping in today but besides that have been resting.
I am still trying to learn my body’s reaction to these treatments. It appears it sneaks up on me 2-3 days after the s tusk day of treatment.
Anyone else?
Hope everyone was able to enjoy the holiday weekend.
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Hi leftfootforward! yes I get very tired 3 days after infusion. BAM by that afternoon .
Hello Carin, nice to meet you!
Ladies, I dont think i have asked this question before and would have to search wayyyy back to see if been asked... do you get echo for heart every 3 months? today.. was mine.. and I have had many... but the tech seemed surprised to see me even tho i explained that the drug I am on we have to monitor heart. she asked if i feel as tho I was having issues ..I said no, again Doc just likes to monitor me. it was afterward that i thought this was odd. but I have had an echo every 3 months since about march 2016.
Denny123... I am going to send you a PM here soon
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leftfoot-yes that was wayyyyyyy too much! Please slow down and take it easy since your body is going through a lot!
DL3- heck, I have had heart tests since 2005 !! I had MUGA scans first which were a nightmare since they had to insert the IV's into my foot! (I have mild bi-lateral lymphedema). Then, TG I read on here about Echo's and have had them every since.
Since my PET scans are now given every 4 months, I get Echo's every 4 months also.
Anyone have problems with neuropathy? My finger tips and toes are numb, and after I get my chemo now, my left hand gets a bit swollen. (But not as badly as when my lymphedema first presented itself). I had my Kadcyla yesterday and was telling my nurse how my left index finger and thumb get numb and lock up a few times a day. She said that since I have had chemo for almost 16 years, that is just the start of neuropathy. (Oh Joy)
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Denny123 I havent had numbness but my hands more like fingers have locked up few times and I sometimes very rare ...get terrible charlie horse in calf when i get the charlie horse it is always while sleeping. I remember back when starting kadcyla the nurse practitioner said I may have to take potasium. I have been adding it and magnesium to my daily vitamins to avoid those painful hand locks and calf charlie horse
okay good to know on echo (i never had muga scan) I thought we should be getting them but the tech today made me question myself!
Ladies our insurance changed for 2018.. I have to get a new oncologist I am super bummed. I started crying like a baby when I told my oncologist at my last appointment ... so frustrating. I Love my Onc and the entire team
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DL3-I also had the Charlie horses in my calves and found the best thing to do was to wiggle my leg furiously until it went away. I do have low potassium, and take 20 meq daily. Have you gotten bloodwork to check it? TG, I haven't had the Charlie horses for several months.
Echo's are required when taking Herceptin or Kadcyla and my chemo a few months ago was delayed since they forgot to schedule an Echo in time. Your tech obviously doesn't know about mono-clonal antibodies and how they can affect the ejection factor.
So sorry about losing your onc. This has been my nightmare since the election since those of us with pre-existing conditions stand to lose our health care. I am on Medicaid and PA has now changed it to 3 different supplements and we have to choose one for Medicaid coverage now. I have UPMC Medicare, and have chosen the UPMC supplement. And the first thing I did was to ask my chemo insurance lady her opinion on which supplement to go with.
Can you choose another health plan? I was on Highmark Medicare until 6 years ago when they dropped me because I am low income. TG for Obama's plan that I couldn't be refused health insurance because of my pre-existing condition, and UPMC then insured me and saved my life.
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Denny123, yes, had to choose a new health plan. which means new onocologist and primary doctor ...UUUGGHHH. thanks for tip on wriggle, because it typically happens at night... I usually jump out of bed and walk best i can it off. I do take a potassium suppliment everyday since it started. Yes my potassium is ALWAYS on low side ...I really must get more water in me. Before my diagnosis, I was viligant on drinking water, now...it is like i just dont. I am terrible and I think not drinking water is causing some of this.
I get bloodwork every 3 weeks. on monday morning labs then see onc hour later then I have to drive back to center next day for kadcyla. it stinks, they use to let us get our infusion same day then about 9 mos ago they changed it to where you have to come back next day. my oncologist said it was an insurance issue with insurance companies they were having not wanting to pay him . mine was never a problem but guess other insurance was giving hard time he said. as mentioned in previous post of mine i switch oncologists and centers in January hoping my new onc gets it all done in one morning, rather than this 2 morning every 3 weeks appointments. which brings me to ask... dont all you ladies get labs prior to each infusion? do you see your oncologist every 3 weeks after labs and before your kadcyla infusion?
Hope you ladies are all doing well. Hugs~
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Hi DL3 and Denny123 and all,
Hope everyone is doing well and feeling good. I’m doing okay. I do get labs every three weeks and then I see either my MO or her nurse practitioner. I also occasionally get the Charlie horse or other muscle cramps but i don’t get them very often. I continue to have a bit of neuropathy in my toes and fingers. It’s a little annoying but in the big picture, not such a bad one as side effects go. I had been taking a vitamin B complex supplement since I started Taxol before Kadcyla to ward off the more significant neuropathy that Taxol caused. I wasn’t sure it was helping until I stopped it after my MO told me that post-Taxol, it was probably not providing any further benefit. It seemed to me that my neuropathy again worsened when off of it so I have now started it up again and I do think it helps. Perhaps something to consider trying, Denny123. DL3, I also have regular echos to monitor my heart function. When I was on Herceptin and Perjeta, I saw heart function decline. It has improved since starting Kadcyla but I also take Lisinipril daily to keep my blood pressure low. Never needed that before but I take a low dose and it seems to be working.
I have a PET scan at the end of this week. I’m nervous about it because I’ve had backaches lately that I never had before. My medical center failed to test my tumor marker (CA 15-3) for the last 9 weeks but finally did last week when I asked about it. It is slightly elevated but not ridiculously so based on my past numbers. I definitely do not want to reach the end of the Kadcyla train yet. I’ve had 23 infusions now so that I’m told that’s a good run but I still want a longer run! The good news is that I still feel pretty good if a little fatigued now and then.
Keep on keeping on everyone!
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DL3...ironically I got a Charlie horse this morning and wriggled my way out of it. I take Hydrochlorothiazide 3 times a week, instead of daily now. My onc said it can deplete the Potassium levels. I do drink a ton of water.
I get my bloodwork, they check it, and within about a half hour, after the onc checks the results, I start my TX. I get my Kadcyla every 3 weeks, but only see him every 4 months after my PET scan. Next PET is Dec 11 and I will see him the 15th.
Margarita...I did ask about B complex years ago, but since my levels are okay, they won't approve it. I had Neuropathy 15 years ago when I finished Taxotere, was okay until now.
Do any of you have fingers that lock up??? My left index finger and thumb lock up sometimes and my chemo nurse thinks it is from almost 16 years of chemo.
Good luck with your PET scan and please let us know the results!
I have felt like crap for the last week--had my chemo on Monday because of the Holiday, had bad gut pains for a few days and extreme fatigue.
After the previous chemo, I didn't have the pains, but had nausea for 3 weeks. This gets so discouraging.
I am back to afternoon naps again and basically being a hermit.
Love to all!
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I could have sworn I replied the other day but i dont see my post/comment
MargaritaMI thinking of you. My Oncologist doesnt use tumor markers. I will say a Prayer for you.
Denny123.. hope your feeling better. sorry you got the charlie horse!
Peace, Love and I am always Praying for a cure for all of us~
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Thanks for the good thoughts and prayers. I had my PET scan but still awaiting results. Back continues to ache but still hoping it’s an unrelated pain.
Denny123, I don’t get the finger lock thing that you mentioned but I do get the Charlie horses and other sudden cramps in various locations. It does make sense that there must be various, adverse effects of many years of chemo. It’s strong stuff they have us on after all.
I’ll check in when I have my scan results. Hope you all are doing well.
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My onc doesn't check tumor markers either. Mine were normal when I first presented with the chest nodes.
Apparently the finger-lock-up isn't just from chemo. A couple of my friends get the same thing, and aren't on chemo.
My PET scan is tomorrow and I will see my onc on Friday. I am in PA and so far, we haven't had more than a dusting of snow, but it is coming. So I get to worry about driving in it and falling and breaking more appendages.
My leg, that I broke in April has been pretty good, but for the last few days I have gotten severe pain right in the middle of my thigh where the bone broke. I get so tired of aches and pains and nausea and fatigue. Ugh
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yes Denny123 I have had "finger lock" i havent had it much. It hurts. the only way i can describe mine and even then I can just describe that you would have visual is like when someone with arthritis fingers lock up that is how mine will look but it isnt from arthritis . i can also tell when one is coming on... you can feel it coming on then BAM locked . it has brought me to tears. I never experienced it before kadcyla so I attribute it to kadcyla. I have probably had less than 10 "lock ups" i have had 23 kadcyla infusions. or is it 24 lol would have to look at my planner to confirm... but close enough. ha
Have a great week ladies.
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Well, I received my PET scan results today. It's sort of a mixed bag. I'm mostly stable (NED-yay) except for one spot on my spine (L-2 boo!) which had shown no hyper-metabolic activity for nearly 2 years butis now described as “intensely hyper-metabolic" - which sounds kind of bad to me (major boo!). It is the likely culprit of my recent back pain though the pain also feels wider spread to me than just one met on one vertebrae. Frankly, I was expecting a worse result but hoping for a better one. Can one met flare on one vertebrae really cause an ache across my entire lower back? Anyway, this same spot was active in my PET of Feb 2016 but has been inactive since then. So, my MO is recommending radiation and then continuing with TDM-1 afterwards to see if we can control this one stubborn met and keep this otherwise good run on this drug going. It seems like a good plan to me because I was worried about blowing through another line of treatment but I will have to temporarily suspend TDM-1 infusions during rads. Anyone else have a similar experience? Hope you all are doing well and feeling good.
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Sorry Margarita-but I beat you!
Well, yesterday was the beginning of my 16th year since being diagnosed with Stage 4 breast cancer. I saw my onc today for the results of my PET scan.
The cancerous node by my esophagus is about the same size, but more active. But the tumors above my heart and the one at the entrance to my lungs have both gotten bigger, more active, and joined together to make one large node.
So I am off Kadcyla now, after almost 4 years. I have to take a month break and meanwhile will go through genomic testing for possible targeted therapy. The testing searches for genomic alterations that can occur through time, and maybe there is a different kind of chemo that might stop the cancer.
I will also go through consideration of a clinical trial Phase 2, of a new chemo, called Poziotinib.
If I fail to qualify for either of the above options, I will have to go on a standard, but really hard combo of Xeloda and Tykerb, both of which are chemo pills.
Radiation is not an option since I have already had rads to my left side.
What a crappy year this has been. Still recovering from a broken femur and shoulder from a fall in April. I lost my 38 year old daughter in July. And my other daughter is going to file for a divorce in a few days. Now this. Makes one wonder if stress really helps cancer to grow.I will still stop back in to visit everyone here.
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Oh yeah-I asked my onc about the Super-Kadcyla and although he was just in a cancer symposium in Texas, he didn't hear about it.
He researched it and it is still only a Phase 1 Clinical Trial....too early for me.
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Oh Denny123! I’m so sorry to hear your latest results - yep, you beat me. I definitely do think that there is a connection between stress and cancer growth. My stage 4 diagnosis came at a point in my life that was very stressful (and generally an unhealthy time) for me though nothing that can compare to the loss of a child such as you have endured this year. Cannot imagine how you’ve coped with such a loss and all the other challenges too. I do think the genetic testing sounds like a very good idea since it would seem that by the time the cancer has found a way to grow around the drug then it must have changed its properties in some way. I hope it will lead to good new options for you. I haven’t heard of Poziotinib but I’m going to research it. In any case, I hope you find some peace in the days to come and that 2018 is a much better year for you. Hang in there! M. PS, please do check in from time to time and let us know how you are doing. You’ve been a great help and support on this thread and we care about you!0
